In a special two-part post, Dr Katherine Pettus, Advocacy Officer of the International Association for Hospice and Palliative Care (IAHPC), and Dr Julie Ling, Chief Executive Officer of the European Association for Palliative Care (EAPC) and Vice-Chair of the Worldwide Hospice Palliative Care Alliance (WHPCA), describe efforts to ensure that palliative care gets a strong voice at the World Health Organization.
As part of a delegation of palliative care advocates, we attended the 67th meeting of the European Regional Committee of the World Health Organization (WHO), which took place 11 to 14 September in Budapest. Dr Gábor Benyó, Vice President of the Hungarian Hospice-Palliative Association, also participated as a member of the IAHPC delegation. The WHPCA and IAHPC were invited to send representatives as both are non-governmental organisations or NGOs (known as ‘non-state actors’ in UN language) in official relations with the WHO. Representatives from other NGOs were also in attendance.The WHO encouraged us all to work together to produce statements on various aspects of the agenda. Consequently, some statements were supported by as many as ten separate organisations.
The newly elected WHO Director-General, Dr Tedros Adhanom Ghebreyesus from Ethiopia, presided over most plenary sessions and some closed ministerial sessions. Since Dr Tedros has defined himself as an advocate of Universal Health Coverage (UHC), our delegation wanted to ensure the oral statements prepared by NGOs in official relations with WHO gave palliative care as much airtime as possible under agenda items relating to UHC and other relevant issues. Although the World Health Assembly passed a historic resolution on palliative care in 2014, it seems that many member states and even officials of the WHO are largely unaware of the cross-cutting and economic benefits of the public health model of palliative care. The impact of palliative care affects so many other items on their policy agendas but its omission indicates that we still have work to do.
The IAHPC and WHPCA worked hard to highlight palliative care on the agenda and submitted jointly both written and oral statements. We also worked with other organisations to ensure that palliative care was included in relevant statements including: the International Federation of Medical Students, WONCA (World Organization of Family Doctors), the World Federation of Occupational Therapists, the European Public Health Alliance, Center for Regional Policy Research and Cooperation, among others. These oral statements related to specific agenda items including the 2030 Agenda for Sustainable Development, Migrant and Refugee Health, Access to Medicines, Communicable and Non-Communicable Diseases, and Sustainable Workforce Development. A priority was to ensure that the draft concept note towards WHO’s Thirteenth General Programme of Work 2019–2023 included palliative care under the spectrum of UHC services. The language in the current draft mentions only “curative and rehabilitative care”, reflecting an older WHO definition of UHC.
Our joint oral statement on this topic, directed to WHO Director-General, drew attention to the WHO’s more recent definition of Universal Health Coverage in its Health Financing for Universal Coverage Page which states, “Universal health coverage (UHC) means that all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.” While this requested correction to the General Programme of Work might seem like a technicality, governments have no obligation to draft the national necessary policies and budgets to cover palliative care unless the text of multi-lateral documents contains the agreed language flagging palliative care as an essential service.
Leave no one behind
Collaboration between otherwise relatively weak NGOs is essential for advancing the global health agenda in the 2030 Agenda for Sustainable Development, whose tagline is ’Leave No One Behind’. Palliative care pays special attention to those ’left behind‘: first, by the healthcare system, as patients and families struggle with the pain and other symptoms associated with life-limiting illnesses, and also by their economic situation, as they may also struggle with debt incurred by buying (possibly) futile treatment and expensive medication. In countries without universal health coverage, such catastrophic, out-of-pocket health-related expenses can drive patients and their families into a ‘medical poverty trap’. Our delegation promoted the argument that well-trained, publicly funded, community-based palliative care teams such as those in Uruguay, could prevent this descent into the medical poverty trap and promote sustainable development in the framework of Agenda 2030. The WHO member states expressed deep concern about the impact of the cost and availability of essential medicines and discussed the issue of joint procurement and compulsory licensing.
Next year’s Regional Meeting will be in September in Rome. We would love to have a stronger IAHPC/WHPCA delegation to ensure that palliative care has a voice in the World Health Organization.
- For more articles from Katherine Pettus, follow her regular Policy and Advocacy page in the IAHPC Newsletter.
- You can read more posts on policy and advocacy on the EAPC Blog.
Look out tomorrow on the EAPC Blog when Katherine Pettus will describe some of the side events that have a bearing on access to palliative care.